Trying to move on

It's been over 3 years now since Mike has died.  The piercing pain isn't as bad but the daily thoughts are still there, thank goodness.  Trying to date a man while you still wish another man were alive is a weird place to be.  I find myself talking about Mike more... to the new guy.... which isn't good.  I mean it isn't like a secret or anything.  And of course, the right guy will understand and blah blah blah.  But let me introduce myself, I'm a 50 year old grieving woman with 2 daughters who will need my constant attention for the rest of our lives.  How does that sound?  It sounds like I should be a lot hotter to pull all that off.
I have met some really nice men.  I have considered a couple of them as a possible long term kind of guy, but as it turns out... I was the only one thinking that way.  It's a bit disappointing when I run through everything in my mind and finally decide to give "this one" a chance only to discover they didn't want a chance.  There was one who had lost his wife to cancer not long before I met him.  I never met his kids... actually I didn't meet anyone.  Odd how I didn't really notice it for about a year.  We had a good time together, we had a lot in common.  He was odd in the ways I liked.  Then without warning....nothing..... nothing at all.  No return text, call, letter or email.  Short of going up to his front door, I put a good effort in to contacting him.  A guy I had dated for over a year, albeit in our own little bubble just wrote me off.  I've read articles where all these new terms are being thrown around in the dating world.  Ghosting... that's what happened to me.  But is it still ghosting if it has been over an entire year?  I feel like it needs a new name.
I've tried a couple of others.  This latest one was interested and would even message me in the morning, that's always the sweetest thing to me... a guy who let's me know he thinks of me when he wakes up.  But then a month later.... he doesn't even respond to a text asking if he wants to come by for dinner.  The next time we talk I try to balance between being nice and being pissed that he couldn't even be enough of a grown ass man to say "no thank you". 
After all of these disappointments I reflect back to how things were with Mike.  It is natural to remember mostly the good things, but he could also be an ass at times.  Keeping that in mind, I try to make excuses for these other men.... he just needs to decompress.... he is a nice man just doesn't realize he didn't say thank you..... on and on and on....
It isn't like I'm in a big hurry to get married or have someone living with me... hell, I don't even think I could spit out the word boyfriend without cringing.  But I do like being in some kind of a relationship.   I would just prefer to be in one with someone with the emotional maturity to be kind in all ways. 
Obviously this is more of a venting post this time.  But it is also where I am in my life after Mike.  I want my life with Mike back.

The Grand Hotel trip came to be

Mike always encouraged me to take little trips, to expand our world a bit.  His world went from being a gregarious and physical man, to confined to a bed and trying to stay connected to the world with a computer.  My trips were my way of bringing the world to him through me.  He looked forward to hearing of my adventures and I was more brave than I am naturally just so that I could see his face with hearing my stories.
I'm still doing these trips, even after 3 years since his passing.  I still follow up my trips with going to the cemetery and telling him all about them.  I can picture his face while I'm telling my stories to the wind.
The Grand Hotel had been on my radar for years and this past week was the perfect timing.  I had to cancel and reschedule the trip a few times due to the girl's health and the nursing schedules.  By the time I rescheduled it this last time, it was cold and rainy.  But as my son said.... Mom, it was on your list to go. Having a good time is optional..... he makes me smile.
Getting there was a nice 7 hour drive with my amazon music on shuffle and trying to concentrate on the road in front of me when my eyes kept diverting to the pretty trees.  I found the dock and made it to a ferry all with perfect timing.  I had never taken a ferry like that before, it was too cold and rainy to stay on top so I had to go below to the seating inside.  I quickly did a headcount and positioned myself near the life preservers and the exit.... just in case.... I'm brave because I'm neurotic at times.  :)
My attraction to this hotel came from the movie Somewhere In Time.  It is just one of those movies that stayed with me, just like Out Of Africa.  I figured getting to Michigan would be a lot easier than getting to Africa, but one of these days....
When I went to the care facility to meet Mike for the first time, I walked into his room and said "You have Richard Collier's room".  That he knew my obscure reference and smiled broadly at our common interest was one of the reasons I knew he was just my type.  I was reminded of that memory while I was sitting in the Grand Hotel talking to a delightful man who was asking me why I was at the Hotel.  Just polite conversation between strangers and yet I found myself telling him that story.  I don't usually talk about Mike to strangers because I can't get used to the thought of him being dead and telling people that he is dead is still so strange to me.
The weather and the short amount of time I had there kept me inside the hotel.  It truly is a grand hotel.  Oh... an extra bonus.... I walked down the steps and saw so many people dressed in period costume!  I was there during the Somewhere In Time weekend!  I had no clue when I scheduled that that would be going on.  The women looked so beautiful with all the lace and ribbons and hats and the men with their top hats.  I should have felt out of place in my comfortable travel clothes that I tried to dress up slightly but still fit in my backpack, but I didn't.  Every person in that room smiled back at me.  Many couples brought me in to their conversations.  It was such an enchanting environment. 
I would like to go back to the island when the weather is warmer and drier so that I can wander around the island and explore the history there. 
It was my last trip planned for 2018 and I am now planning on some of the other trips that Mike and I had talked about.  He's always with me even though some of my memories of us are fading a bit, blending more and more into just one big picture. 

Thank goodness for the ENT surgeon (sarcasm)

I had been up all night with Taylor.  She didn't have any other symptoms other than a higher heart rate and just couldn't go to sleep.  Sometimes that happens to her and it is usually related to her gut, but she also has neurological glitches that can contribute.  The nurse came on at 8am and I went to bed.  At 10:10am the nurse woke me up saying he needed help with Taylor.
I jumped out of bed and went straight to her bedroom and saw her blue and her oxygen saturation monitor was reading 17%..... you and I could hold our breath for as long as we can and still not be able to get that percentage lower than 88% at the lowest.  All at once it hits that if I don't do everything exactly right she will die.  There is a good chance she will die regardless of what I do.  All the experiences in the past come running through my mind. First thing to do is to try to pass the suction catheter into the trachea tube and see what you can suck out.  The catheter wouldn't advance.  With most patients, this is when you would change the trachea tube.  With Taylor, if that is attempted, she will likely die while making an attempt to prep the new tube and the success is so low that it risks her even farther (she has a false track/fistual and a malformed trachea).  So that is a last resort option.
My mind switches to trying to advance the catheter with first putting saline down her trachea tube.  That sounds counter intuitive since it sounds like you are drowning her, but it is my best option.  The trachea tube care class that the hospital had me take when Mackenzie had her tube placed just this year taught that evidence based practice says not to use saline as a flush to thin the secretions because it doesn't work.  What that study fails to consider is that the goal is not always to thin the secretions, in this case it is to move them.  I was desperately hoping that using 3ml of normal saline could possibly move the thickened secretions out of the trachea tube to allow me to pass the catheter down further in the hopes of clearing the blockage.  The first few attempts of this does not do anything.  The next thought came from when  Dr. Fitton told me when they were about 8 years old that I could use the Ambu bag to "pop" their lungs open and remove a blockage.  I grab the ambu bag and have the nurse attach it to oxygen at 8 liters.  It isn't enough to try to remove the blockage, I need to give her enough oxygen so her brain and organs don't become damaged/fail.  When I first tried the ambu bag it wouldn't easily let me give her a breath.  There was too much resistance.  I went back and forth between suctioning and using the saline bullets and using the ambu bag until I finally saw some color in her face (that wasn't blue).  Let me tell you too that there is nothing in nursing school that teaches you how to revive your own child.  It isn't just the technique of how to suction and how to bag.  It takes an intuition that can't be taught.  I have to know when to switch, I have to know when to stop and assess, I have to know when too much can be too much, I have to know how to not do damage, I have to know at what pace to squeeze the ambu bag with the resistance, how much of the saline to use at what interval, how often to suction before using the ambu bag.  I chose to use the suction that was inline because that was attached to her ventilator and through that circuit I had 5 liters of oxygen.  Using an open suction with a 14 fr could have been more effective than the 10 fr used with the ventilator since it is bigger, but it would leave her without oxygen supplementation for too long since her oxygen saturation wasn't greater than 70 yet.  The downside to using the 10fr inline catheter was because it is smaller and would take longer to clear secretions but also because the ventilator would be working against my efforst by trying to push air into her while I'm trying to suction out of her.  I chose to use the 10fr because oxygen was priority.  I reconsidered changing the trachea tube after 10 minutes but as long as I could advance that catheter, the new tube would do more harm than good.  The other lesson that came rushing back was when I had to resuscitate Mike and I deflated his trachea tube cuff because I knew that that would allow air to move around the trachea tube.  I knew that that could possibly improve Taylor's chances of moving the secretions. 
I worked with her for over 20 minutes.  Luckily, I wasn't alone.  I could give instructions to the nurse to hook things up and to get supplies and make the call to 911 without having to take my attention off of Taylor.
When the squad arrived, they knew to let me just stay on her and not intervene unless I ask.  They've been there before.  Finally she started to bag easy and she started getting her oxygen saturation levels in the 90s with the 5 liters.  She was stable enough to transport now.  Even still transport could dislodge another mucous plug so she still wasn't completely out of danger.
Upon arriving at the hospital she was stable and smiling at me.  This also means that when she presented to the ED, she was no longer looked at as critical and they made the judgement to put her on the "other side".  I had to argue how volatile she was and thankfully the squad medic backed me up.  They put her on the critical side.
The ENT surgeon was called to see her since assessing her airway and the integrity of her trachea was important.  The ENT Resident noticed that the air was out of her cuff and put 4ml in which of course brought her VTE (air measured in her lungs while breathing) up.  I hadn't put the air back in because I was still thinking that the secretions would benefit from being able to be coughed around the trachea tube if the cuff was down.
Taylor was scheduled to go into the hospital the next day to be evaluated during a switch from the ventilator she had been on for 10 years that was no longer going to be serviced by the company, to the Trilogy vent that Mackenzie is on.  They decided to go ahead and admit her since they were able to have the company bring the machine in early.
We get up to the floor and a resident had decided to start her on antibiotic because her chest xray showed pneumonia and she had a temperature.  Sound appropriate, except I saw the film, there wasn't a consolidation.  What the resident was reading was the radiologist impression that states the same thing every single time..... pneumonia vs. atelectasis.  I also knew that for 20 minutes, her lower lobes were not moving (breathing) which would make the atelectasis more noticeable but yet explained by something other than a pneumonia.  Also the fever they were using as a diagnosis was 100.4.  Not nearly high enough to indicate for Taylor that she was ill.  It was a stress response for her.  I asked for some time to let her stabilize on her own and to give the attending a chance to assess her.  Luckily that discussion went in our favor.  The attending assessed her and agreed that Taylor did not have pneumonia.  Knowing Taylor and having the guts to piss off a doctor saved Taylor from being on a heavy duty antibiotic and extending her stay longer than she would need.
Taylor made the switch to the Trilogy ventilator without any issues!  That was a relief to be sure.
The next morning while doing rounds the team of pulmonary doctors came around and reported to the attending (new one for the new day) that Taylor had a hypoxic episode but that the ENT surgeon put air in her cuff and she improved........
What a misleading statement.  I usually let their reports pass by without correcting them but this time I just couldn't... I heard myself say "Yes, thank God the ENT surgeon had a 5ml syringe of air available".  How can they treat her if they don't fully appreciate all that she has just gone through?

I still have my baby, that should be all that matters, but sometimes I just want to scream.

inspiration comes unexpectedly sometimes

I haven't been writing.  In this blog or anywhere for a couple of months.  Then I went to a dinner at the Columbus Museum of Art because a friend was having a behind the scenes presentation dinner showcasing his collection.  I didn't know anyone except my friend, the collector, and he was busy with the room so I met the people seated at my table.  One was the head docent and her husband, another couple sitting across from me, he used to own a local comic book store... a good one...  Then there was an older lady who had stark white hair cut blunt like Sia's wig and bright red lips.  I took to her right away, she was so engaging and interesting.  During our conversation she spoke of being an author.  She wrote her first book when she was 60 and her second book a few years later.  I was stunned to learn that she was now 80 years old!  80 years old and still interesting and vibrant and living life on her terms.  She was quite the inspiration.  When I shyly mentioned that I had wanted to write a book but was so intimidated that I just started writing in a blog, she squeezed my hand and said "just write".  So simple, yet so profound.  She said that as long as I keep writing the book will create itself.  I mentioned too that I was afraid of not getting things in the right order or remembering things incorrectly and she said "don't worry about any of that, that's what an editor is for.  You just write.  You write your story, your words, your memories."  
So, I am writing again.  My story, my words, my memories.

ALS awareness month

May is deemed ALS Awareness Month.  When I first met Mike, I had only a vague idea of what ALS was.  I looked it up.  I knew what I saw, I saw a man paralyzed, unable to breathe, unable to talk, who was still so engaging, so full of life that I was drawn to him.
I'll get real on awareness, so much more than what you see..... In 2 years of living together, I can count on one hand the number of times he had anyone visit.  This man who was so well loved and so active, a man who had thousands of friends (according to facebook) rarely had anyone come say hello.  Why?.... most of the time I never asked.  It made people uncomfortable to ask them outright, why do you promise all these things for the world of Facebook to see, yet you do nothing?  Why all the offers of help and yet no one helping?  Why all the fundraisers and money raised in your name and yet nothing spent on your needs?
After Mike died, I had a strange number of people contacting me asking me if I could talk and do what I could to help, people they knew and had come across who had been diagnosed with ALS... this supposed rare disease.  One woman stands out.  Her husband had been diagnosed not long ago and he already had lost a lot of his ability to care for himself.  I called her,  not even knowing what to say really.  I let her talk, I heard her saying all the things I had felt with caring for Mike.  I listened to her telling a complete stranger...me....how much she hurt on a daily basis.  How the county caseworkers all told her the same thing... we are working on it, we will get back to you. I could hear her reluctance to ask for help.  I knew that feeling too, you have asked so many time before with no help being given, that you don't even have the will or energy to ask again. By the time we hung up the phone, I told her I would meet with her caseworker with her.  Sometimes it is a real help to someone to not stand there alone, to have someone with you to hold people accountable to do the things they should be doing.  I was waiting to hear from her to tell me when the appointment was scheduled.  The next time I heard from her was when she sent me a message telling me that her husband was dead.  I could hear the guilty mixture of grief and relief.  I knew it well.

That's the reality of this disease.

Mike never got the help he was lead to believe he would get from all the money that his friends had raised to help him.  He didn't get the hallway widened so that he could come into the livingroom with us.  He didn't get the ramp out his door so that he could sit outside.  He didn't get the lift van so he could get to doctor appointments.  But the worst of it was when he couldn't get anyone here to help me care for him.  The Trust he had had paid for an aide to sit with him in the nursing home when he felt that he was at risk for retaliation, but when we could no longer get an agency to take on his care, they wouldn't pay for an aide to help me here at home.
Here is another reality of this disease, it's messy, it's stinky, it strips you of your dignity.  Mike had to watch me, helpless, struggle to care for him.  He knew how hard it was to hold his 6'3" body on his side with one hand while I cleaned his backside and stripped his bedsheets with the other hand.  He knew.  He sent an email to his friends begging for help.  Begging.... the man who had thousands of friends who offered to help all the time and yet he had to beg for help for his girlfriend.  There goes his dignity yet again.
These friends are still raising money in his name.  There is still a fund out there now giving money, a lot of money, to other football players with neurological disease.  As well intentioned as the people giving the money are, I often wonder if they know that when Mike needed help the most with these funds, he didn't get them.
I don't think people know the reality of what faces most people diagnosed with ALS.... you may know on a cognitive level what happens, but does anyone realize how many thousands of people there are who chose to die simply because they don't have the money?  They don't want to drain all the resources for their family.  They don't even have a way of communicating anymore.  They still want to be a part of the lives of their friends and family and yet piece by piece as they lose their physical abilities, they lose their friends and family.  They chose to die not because they can't take the hardship of what the disease does to them physically, but because of what it does to them mentally.
Mike was strong, Mike was resilient, Mike was exceptional, Mike was forgiving, Mike was hopeful..... Mike wanted to live even with everything he had lost.  He wanted to still be a positive part of the existence of all of us.
So my effort in recognizing this Awareness Month is meant to ask you all to remember Mike by helping someone.  Doesn't even need to be ALS related.  But don't just offer to help.... do it.  It's easy to give money (when you have it), but DO something.  Show up, be present, be a witness to the lives of others and give them the gift of knowing they matter.  We all know people struggling, don't just type encouraging words on Facebook, don't be afraid of seeing their pain.  Mike wanted fellowship.  Give that.

Happy.... it doesn't always come easy

Kenzie had her first follow up appointment with the ENT surgeon this week.  The first time for me to send her off somewhere without me since the beginning of all of this in January.  To say it was nerve wracking would be a gross understatement.  I had planned on using the ambulette company who took us home from the hospital for transportation to the appointment.  The driver even gave me their card telling me to give them a call when the appointment is scheduled.  I called a couple days before the appointment to schedule and was told that they wouldn't schedule anything any earlier than 24 hours in advance. I called them back the day before the appointment and was then told that they don't transfer patients from a residence to an appointment.  Great......  It is a covered service with our insurances but after calling 8 different companies, I came up short handed.  So now I needed to change focus and find a driver and send her with a nurse but without me so I can be Taylor's nurse.  Their Dad stepped up and said he would do it.  That was a huge help.  Now that the transportation was figured out I was free to go back to stressing over everything that could possibly go wrong.  Not just with the transportation but with what could go wrong with the appointment. 
It didn't help any that Mackenzie was still having issues with mucous plugs.  It may not sound all that serious, it isn't like you take an expectorant and blow your nose. For Kenzie it meant that she is struggling to breathe because her mucous has thickened and dried up so much that it is stuck in her lungs blocking her airway.  You will see her struggling, trying to cough, turning different colors, and watch her oxygen saturation numbers go down despite already giving her 2 liter of oxygen.  Your lucky if it dislodges.  I called the pulmonary office and asked if they could see her while she was there for the ENT appointment. They told me that her doctor was not seeing patients that day but that they will have her call me.  Close enough...
It was now time to send her off.  I packed everything you could need to try to keep someone alive and quizzed both the nurse and her Dad on what they would do if an event happened. 
She made it to the appointment fine and while waiting to see the ENT surgeon I got a text from the nurse telling me that her pulmonary doctor had just stopped in to see her!  She personally left her office and walked over to the other clinic and examined Mackenzie.  That's incredible to me.  I'm just so grateful for the willingness of her doctors to help her.
Taylor and I sat outside on the porch swing (me in the swing and Taylor in her wheelchair being pushed by my foot and the motion of the swing) in an attempt to relax and not worry so much for Mackenzie. 
Once Mackenzie made it back home and I got a report from the nurse that everything went great, I felt like I took my first breath that day.  The erosion is almost undetectable, the tube length is working out great and she tolerated the procedure well.  They took a culture of her sputum from the order of the pulmonary physician.  The pulmonary doctor called me later that same day because the ENT surgeon hadn't made any notes in her chart yet and she knew that I had questions that she deferred until they had finished scoping her airway.  We talked for probably 30 minutes about Kenzie's new level of care.... what I've seen, what I've tried to do, what they have diagnosed her with...
It was the first time since Kenzie has come home that I felt like I was talking to someone who understood me and all my concerns for caring for Mackenzie.  That's the other part of this... I'm alone.  As many friends and family that I have that care..... I'm alone in all of this.  No one has ever stood beside me and witnessed what all I have witnessed with my girls over all these years.  No one has ever stood beside me and witnessed what it was like taking care of Mike.  How can anyone possibly understand me?  Talking with this doctor who has helped me come to grips with Taylor over the past 8 years when I had to decide to allow her trach tube and vent, was the first time that someone understood me.  Lately I've had some comments from people that I am overreacting when she is fine.  I can promise you I am not.  I'm not perfect but I don't exaggerate.  If anything I play it down so other people don't freak out and feel uncomfortable around me or my girls. 
She understood my need for guidance on how to prevent things with Mackenzie and not just constantly react to traumatic events.  Her airway and lungs were so damaged by that flu and what it took to keep her alive.  It will be years before she is out of the woods, if ever. My daughters are fighters, they kick ass.  They deserve to be as happy and fulfilled as possible to make all this fighting worth it.  That's my goal.  In order to do that I have to reconcile the fear with the happy.  I can't get rid of either of those feelings. 
I had no idea how much of my taking care of Mike would come flooding back with all these new events with Mackenzie.  Let's just throw that on top of my feelings I can't get rid of.  Every time I witness Mackenzie struggling to breathe, I think of Mike.  I think of Mike and how there wasn't a damn thing I could do. 
That's an easy concept, right?  None of us are God..... blah blah blah.... but the truth is that I expect of myself every thing I can possibly give them, that's where what I do keeps them alive.  It kept Mike alive longer than most thought.  I worked hard to keep his blood pressure up and lungs clear and fevers down and skin integrity good for the 2 years he lived with us.  It kept him alive.  I was in fear of losing him plenty of times during those 2 years, but I was also happy.  Happy.... that's another easy concept, right?  I want it.... I want happy as much as I want healthy.  That's what makes all this work.  Despite all the shit that Mike and my girls have had to endure in their lives, they are and were happy.  If they can live with fear and be happy, then so can I. 
This entry kind of rambled.  oh well.......

My daughter, the miracle and how she smiles though it all

When Mackenzie came home from the hospital with her trach and vent, I thought that I could manage her at home and we wouldn't be back up there for a very long time.  The last blog tells you that that didn't happen, but then I thought ok..... she's good now.  Then a week ago she started having asthma symptoms again that couldn't be managed at home.  She was brought in to the hospital by squad and admitted.  This is where the miracle happened. 
The attending that was on that weekend was the one you want if your kid is critical.  I have never doubted him, ever.  Which if you know anything of me by now, I doubt everyone.  He looked at her... that's what he did.  He stood and looked at her.  That's all he needed to do to know that she wasn't having an asthma attack that would respond to albuterol.  Against what would be normal, he wanted to take her off the albuterol and instead have the pulmonary team come in a scope her airway.  They did.... which is another surprise since it was on a Saturday.  The Attending was in the room watching the procedure.  I believe he was doing this because he wanted to make sure they found what he thought to be true.  Without any indication he ordered the test that saved her life.
From the scope they were able to see that he trachea had eroded from the pressure of a trachea tube that was not a good length for her.  Eroded.... let that sink in for a moment.... her trachea that needs to be intact to sustain life,..... eroded.  
After that finding he asked the ENT attending to come and look at her.  They did and decided that she needed to go to the OR to get a better look at her trachea and to put in another sized tube.  The tube needed to be longer than the eroded area so that no pressure was placed on it causing further damage. 
After the OR, they found that the erosion was more significant than originally thought.  Part of her cartiledge had also eroded and right on the other side of this erosion was a major artery.  If it had eroded any more, it would have hit that artery and she would have bled to death.  This likely would have happened at home, with no reason to think anything was wrong. 
The consulted the cardiac thoracic surgeon so if she were to need emergency surgery, they would be familiar with her.  They also ordered a CT scan/ angiogram.  Luckily the artery was still intact.
Now we wait..... we wait for a custom sized trach tube to be delivered and we wait for her trachea to heal enough that it wasn't life threatening.  They told me to expect up to 3 weeks for it to heal.
This was on a Monday, on Friday they had the custom sized trach tube and took her back to the OR to scope her again and to put in the new sized trach tube. 
The doctor came out of the OR and told me that the tube is the perfect size for her and that we can't inflate the cuff because the erosion still needs to heal....but..... it had healed in 4 days more than what he thought it would have in 20.  4 days..... in 4 days this erosion had healed enough that should could go home. 
So not only was this erosion a miracle that it was found, it is another miracle that it healed so quickly. 

The other finding was that in addition to this erosion, the left branch of her lungs had developed what is named bronchial malasia.  It collapses with every exhale.  It is theorized that this has been an undiagnosed condition for what is likely years.  The only treatment is the use of the ventilator at a higher PEEP setting.... which the critical care attending physician had already done.  He had already made the change to give her the treatment for what had yet to be discovered.  Let that one sink in too.....

Once he told me that the only treatment was the use of the PEEP, it dawned on me that Mackenzie will not be coming off of her vent as I had previously hoped.  One tear, one little tear fell from my eye.  He saw it and then HE realized that that was new information for me.  The next day during rounds, he very casually said.... if you were to look back on Mackenzie's chest xrays over the past 23 years, you would see that her left lower lung has been getting progressively worse.  You could still make a case for her one day coming off the vent if this has been something she has been living with for years without needing ventilator support.  I could have hugged him..... seriously clung to him saying nothing but thank you.  He did this.... he took his time and researched this for my baby. After rounds he came back by (which is what they do there) and when I saw him walk in I just said "thank you"....  His response was "I didn't just do it because you were upset".  Odd thing to say right?  It was the perfect thing to say.  He said a lot with that one sentence.

So many times my daughters have had their life extended from this doctor.  One man, one blessed man, one gifted man who pretends to not be emotionally involved .... has saved her life.  We are so lucky.

Back to the hospital...... same exact mistakes

The weather is getting warmer here and all this equipment.... two ventilators, two oxygen concentrators, one humidifer..... is creating some serious heat. The electric bill is going to go right back up to what it was when Mike was here.  Small price to pay..... just things to make note of.  I should have put the air conditioning on way before I did and Mackenzie paid a price for my mistake. 
She was having trouble breathing and broke out in a clammy sweat and wheezing and a lot more effort to breathe.  I gave her 2 breathing treatments and it wasn't making enough of a difference.  I put a fan on her and called the pulmonologist on call and was advised to go to the ED.  It was the very last thing I wanted for her, but she is so new to all of this that I took the advise.  It meant having to call my brother to come stay with Taylor with no notice. 
Kenzie was given 6 consecutive breathing treatments but with a different kind of medicine.  Still bronchial dialators but Albuterol and Atrovent.  It isn't advised to do that at the house due to cardiac risks.  Kenzie responded beautifully but they still wanted to admit her.  She was admitted under pulmonary service but in critical care.
Once again, ED was great, but as soon as we got up to the floor.... everything that I tried to prevent as common problems just couldn't be prevented without me guarding her for every second.  Once again I am repeating myself..... don't drown her, don't pull her over by just her arm, don't give all of that all at once.....
Even the things that I was able to get written in as physician's orders were being ignored.  I knew that they wouldn't get her brand of formula up to the floor until the morning so I asked the doctor to write for just Pediasure because I knew they always had that in stock on the floor.  Once we were up on the floor I told them she needed to get her feeds started because she had been without fluids of any kind for over 4 hours.  That's 400 ml.... you can't make that up in a day without giving her too much unless it's IV.  They tried saying that she has two orders in there and they don't have it on the floor.  I had to turn on the bitch mode and insist that they go get the Pediasure and start her feeds.... now.  That didn't go over well, of course, but given the last admit when I was nice and apologetic for days thinking that that's what Mike would want me to do and seeing how horrible it all turned out... I went back to being Ann not the new and improved Ann, the Ann that gets shit done. 
If you read a previous post I think I wrote that her sodium chloride (for hyponatremia) (not enough salt) needed to be diluted down in her feed bag because giving her the full 30ml all at once in her j-tube made her gag and wretch something horrible.  Knowing this, I had the doctor write an order to add it to the food bag.  I was relieved to have that issue resolved until I woke up at 8:15 having fallen asleep sitting up at 6am to see the nurse starting to give it to her... in her j-tube.... right after giving her over 30ml total volume of other meds that she couldn't remember what they were.  One of them was her Methadone.  She is still being slowly weaned from that narcotic.  This nurse MIXED her Methadone in with all her other medication in one syringe!! No on in their right mind would mix a narcotic like that.  I raised my voice telling her what bad nursing judgement that was and why.  She didn't care.  She didn't care one bit.  She even argued with me about giving the sodium chloride into her j-tube.... "Mom, we give it this way all the time"....  GRRRRRR
I slept for maybe 2 hours, was awake for maybe 30 minutes and caught 4 mistakes! 
These aren't issues that are specific to Mackenzie, these are general protocols that this nurse and many others choose to ignore, because they can.  Because these kids are already in critical care and if something were to go wrong...... well..... sometimes these things just happen.
Luckily, the pulmonary team was the same one to discharge Mackenzie just a couple weeks earlier.They all agreed that Mackenzie was well enough to go home.  We went home with refills on medication (it's challenging to get that done without being "seen"), a protocol on what I can do for her if she has another asthma attack, and a repeat xray to see how much her lungs have already improved. 
I have been working so hard at keeping her healthy and home.  Taylor too.  Taylor was still on antibiotic during all of this and needing more attention.  I'm beginning to wonder if this "more attention" is just going to be our new normal.  I wonder if I can keep doing all these hours myself?  Right before Kenzie got sick, I had fired one nurse and another quit unexpectedly.  I am doing their shifts along with the required "Mom" hours (8 hours a day gratis due to the State needing me to take responsibility for my own child even though she isn't a minor anymore).  I requested that the nursing hours be granted for 20 hours a day since that is what we used to have for Taylor until they changed waivers and reduced it with no appeal since it was a new waiver.  They approved 18 hours a day, which is only 2 more.  And I need to hire another nurse.  That is going to be so difficult.  I'd rather just provide the care myself right now.  I think it's the only way that I can keep them out of the hospital is being more direct care.
But I'm tired.  I get dizzy easy.  My legs buckle underneath me at weird times.  Anytime I sit down, I fall asleep.  The stress of all of this is getting to me and I haven't figured out a way to make it better yet.  I'm working on it.
Along with all this stress, I'm also feeling a lot of guilt.  I feel guilt because I know that if Mike were still alive that there is no way I could do all of this by myself.  When he was alive, I literally begged anyone... family, friends, his trust.... anyone for help and received nothing.  Mike would have felt more guilt than I do now if he were alive and knew that he was the reason I couldn't be with my kids in the hospital.  Kenzie would have likely died without me there.  I miss him horribly, especially with all this going on.... and yet, I am relieved that he isn't here for me to have to care for. .... talk about feeling like shit.

"Everyone is doing their best" their best at times was pitiful

Being the only parent around for your kids has it's pluses and minuses.  One minus is that when you are a mother with your child in critical care, eventually you will be outnumbered.  There will come a time when so many mistakes have been made and even though you have tried to correct them as they occur with a smile on your face, eventually, you will be labeled and you will be messed with.  This would not happen if I had a husband standing beside me, I can assure you.
Being a nurse and yet not in charge of anything including your very own child is beyond frustrating.  Knowing when procedure is broken, mistakes are made, mistakes are covered up, lies are being told and yet there isn't one damn thing you can do about it is as much a hardship as worrying about your child.  Not having Mike to talk to is still so difficult.  He lived it too, not just because he literally lived with us, but because his life depended on the medical staff too.  That kind of understanding is hard to find.  It's something that we could always take comfort in each other with knowing we both know.
Here we are in a major medical hospital, one that is awarded for it's safety as they are quick to tell you, and yet so many mistakes.... some minor, some major.......... but it doesn't matter.  The phrase that I heard with Mike and his Harvard cohorts is "we take care of our own".... that's an ICU staff in a nutshell.  They will even have it so turned around that you will feel guilty for speaking against them, afterall..... they are saving lives.  There are other sick kids in the hospital, not just yours......  speak up anyway.
There is a patient advocate available to you, but they don't report to anyone outside of the hospital.  If you try going outside of the hospital for a resolution, you need to wait until your child has been discharged.... just trust me on that one.
I list just some of them for you here:



- I always slept in a recliner by her bed so that they would have to move me to do anything with her.  So knowing that nothing was done to her, remarkably their charting still reflected Medicaid rules.
- When nitric oxide was trialed in an effort to keep her body oxygenated, I was told that it was too expensive to continue and they wouldn't be wasting resources.
- In order to feed her it was necessary to put the food and meds into her intestine instead of her stomach.  The tube became clogged and they couldn't use it.  They wouldn't do anything about it because it was "the weekend" and they would have to call the Intervention Radiologist oncall.  They refused and kept her on IV fluids instead.
- while getting nutrition in her intestines (the hole is made in the stomach but they pass a tube through the stomach into the intestines), they started at just 10ml per hour increasing by 10 every 4 hours.  She made it up to 40 when I noticed the nurse preparing to give her her medication.  They had switched from IV meds to "oral" meds after seeing that she was tolerating her feeds. However, the total volume of all the meds the nurse was giving was 120ml.  The nurse gave 120ml into her intestine within a 2 minute time frame at most.  She could not understand why this angered me.  I kept hearing from the nurse and her supervisor "she needs her meds, Mom". No one except the dietician could understand my complaint of bolusing a volume greater than she was received over an hour all within 2 minutes.  Consequently, Mackenzie was gagging and coughing .... they refused to see the connection.
- when attempting to give her food into her stomach instead of straight to her intestines, the nurse started the food going into her stomach and wanted to leave the tube for her intestines open to drain.  When I complained I heard "we need to keep her intestines open to release the gas, Mom.  You wouldn't want her gagging and throwing up".  Once again, nurse and supervisor failed to see that opening up the intestines which are BELOW the stomach would essentially be getting rid of all the food they are putting in.
- while changing her adult diaper for stool they like to just throw the dirty diaper on the floor instead of using a trash can.  This can lead to all kinds of problems, but this one time it was on the floor when her ventilator tubing fell to the ground.  The nurse picked up the tubing and turned to me and asked "what do you want me to do, Mom?". I had been talking to Mackenzie's physical therapist at the time and caught off guard I said "she needs to breathe".  In my mind that meant don't just stand there, get the ambu bag and breathe for her.  Instead, she reconnected the ventilator tubing that had just fallen to the ground right next to the diaper full of shit

-housekeeping bumped her nitric oxide tank and it alarms. The nurse in the room pages rt then leaves the room. She continues to alarm and desat with no one in the room but me. The interface display shows the nitric oxide is not getting to her. 12 minutes pass before anyone comes in the room. The RT assumes it's a superficial alarm until I tell him that she's now sating at 75 and the nitric oxide isn't getting to her. He fixes the connection and gives her 100% oxygen. The nurse never did come back into the room.

- Kenzie's midline was red. My sister was here with her during the night and alerted the nurse. The nurse said it flushed fine  (as a midline likely would) and used it to give her 4am Vanco. I arrived at 0830 and after seeing her red streaked armed and asking her nurse to have it looked at is when I hear of the night events. Her access was pulled and treated for thromboflubitis  (sp?). The nurse who dosed the vanco did not report off of the redness. 3 days later it's still ropey and red.

- the nurse removed her silver impregnated foam dressing from her cvl infected site to apply the clindamycin instead of applying it to the staph on her cheek. 

- her blood pressure cuff is never removed or rotated. I have been taking it off for skin integrity but a nurse hasn't for days. 

- she had an EEG, the next day I felt a hard lead still attached to the back of her head. I removed it an mentioned the redness to the nurse. 

-the nurses had offered to get me a parent tray, the food trays pass by me, but Nuanna at the desk has literally chased me down the hallway twice now to tell me that the covered container of pudding from the cafeteria is not allowed. 

- while on a cpap trial, she went down to 85% and was alarming. No one responded for 15 minutes. The nurses response was to change the parameter so it wouldn't alarm. I asked her not to during a cpap trial her response was "doesn't matter to me, your the one going to have to hear it." She changed it anyway after I fell asleep.

- 3 hours spent arguing with Eddie as ANP regarding bipap resulting in my requesting blood gas since we were at an impasse.  Her ph was 7.22 she went back on bipap.

- when Dr. Karsies counseled me on ECMO, my parents drove 10 hours to try to see her thinking she wouldn't live. They were denied coming up due to the flu restricted visitor list (That's also much longer story). It was resolved by a nurse allowing them only to be written up for it.

- moved to H02B to continue monitoring for ECMO. First few days all care was excellent. 

- the visitor list continued to be a problem and things were exaggerated and I contacted the patient advocate for help. For 2 days nurses and supervisors were not allowing our Pastor to visit.

- she was eventually not monitored as closely resulting in preventable problems. Such as an unmonitored temp resulting in my confrontation with the charge nurse. Kenzie's temp was inaccurately being measured and when I corrected their method she was 102.2 not 100.2. Big difference considering I was also complaining of redness at the cvl site.

- it took 3 days of elevated temps and my complaints until the cvl was pulled after an ID consult.

- Picu attending denying an infection until my picture of the puss at the insertion site. I don't believe the ID doctors would order Vanco for a superficial skin infection.

- staph infection on her face was also something I spent days trying to get addressed by the nurse until I asked during rounds if we could switch to clindamycin since it was getting worse. ID physicians felt it was connected to the cvl infection. 

-any complaints I am making are resulting in retaliation. When I complained of the temp method, the charge nurse instead complained about my not wearing a gown even though she was droplet and not contact precautions. She was not friendly. 

- after taking over a week to get the visitation list modified, the charge nurse not only refused to make the changes, she slapped my list down on doc station in the room and sternly said "we're not doing this. Someone will be in to talk to you". My friend was currently waiting to come up, she went home. 

- cpap sprints were ordered as 3 a day, in 24 hours she received none. Her breathing treatments were every 6 hours, they were consistently given up to 2 hours late. When her xray showed worse, I made a complaint. Mackenzie's care did not improve from my complaint. But the diffuser that I had been using for 4 days after being encouraged to bring it in from her nurse and rt last Saturday, became their focus and they told me the RT complained that it was making her asthma worse. Instead of reassigning her I was told we couldn't use the diffuser. If lavender was irritating her asthma, I find it difficult to believe that she can do her job here with all the disinfectant that irritates me. 

-Dr. Fitch wanted Kenzie up in her wheelchair. PT was consulted and kenzie was improving with her tidal volumes. Today, Dr. Estrada doesn't want her in her chair because you don't put an intubated patient in a wheelchair. 

- Dr. Fitch said if Kenzie continues on this trajectory she could be evaluated for being extubated. Dr. Estrada told me that she is weeks away from being extubated and that she needs a trach tube. That if she were in an adult hospital they would have already done it.

- then there are countless episodes of the nurses literally drowning Kenz because they neglect to drain her circuit before moving her. This results in not only immediate distress, but it sets her lungs back needing a higher fi02.

-then there are countless episodes of the nurses repositioning Kenz without untying her vent circuit from the bed rail resulting in the ET tube being displaced. 

-then there is the autonomy of the nurses with regard to peri area care resulting in a horribly involved yeast infection resulting in a wound care consult only to have those orders also ignored resulting in another consult. 

-then there are some nurses documenting things that they are not doing, such as position changes and diaper changes. I know of the false documenting because the charge nurse tells me what they write. 

-the autonomy given to the RT has me witnessing them providing treatments without listening to her lungs at all, let alone before or after. And no suctioning even being attempted because they are told during report that she hasn't had anything out of her ET tube.

-an RT told my sister (she stayed awake all night so I could go home) that it is because of me that she isn't getting anything out of her lungs because I won't let them use a Yanker  (bite reflex) and that I am suctioning her all wrong. (Hard to believe I've kept Taylor alive for 8 years if I were so incompetent).

-being told "it's too expensive to continue" and "we can't do that on the weekend"  or "I dont care, Mom. How do you want to do it" are other statements that don't belong in any PICU, in my opinion. 

- RT comes in the room to switch her cpap sprint over to support. It was 5:15. I asked when it was started and she answered 11:55. When I said it was 20 minutes late she said it was only 10. It took almost 10 minutes to explain to her why it would be 20 minutes late with me pointing to the clock and counting by 5. Considering math is an important component of her job, I didn't feel confident in her skills.

- an RT was standing bedside checking the vent. I told her I could hear an air leak and I thought it was coming from the MDI adapter. She insisted it was from her mouth since "that's where air leaks". Before I could stop her, she was putting air in her cuff. I could still hear the air leak she went to put more air in but I was able to stop her. The MDI adapter was open. I told her that risking the integrity of her trach (ischemic pressure) by increase the cuff pressure instead of recognizing the difference in sound was the wrong decision that she almost made twice. (There is a distinct difference in sound between oral cavity and circuit)

- rt was bedside while mackenzie was coughing multiple times. Even with me and the nurse asking her to suctioning her airway she didn't. The nurse went over and did it herself while explaining to the RT that it is best to assist pulmonary clearance while kenzie is already coughing. 

- while waiting in the hallway to speak to the charge nurse about the assignment of her night nurse (complaints from the night before I've already mentioned) I heard an alarm. I went in to see the nurse who had been wiping her butt, now suctioning her airway. When she saw me she started saying how much she was getting out of her and how "good" that was. You could clearly see that it was all the water that she had just dumped in her. Shortly after, Kenzie started running a temp again. I suspect that this is a strong suspect for an etiology. If not, it's still pretty gross.

- infectious disease wanted to test quantitative for flu by nose and et. Kenzie coughed and for the first time we had a decent specimen. I asked the nurse to see if they wanted to run cultures off of it too. She told me that they wouldn't run cultures on it because it wasn't sterile. It was sterile.... I asked them to change the Ballard first. She also said they would have to go deeper for a culture. This isn't my understanding.

- nurse Stephanie came in the room at 835 for the first time her shift. Mackenzie had been coughing and I was clearing her airway as t nurse walked in. An appropriate response would have been ... here let me do that for you followed by a reminder of how I shouldn't have to or offering to get the respiratory therapist. She did neither. Instead she attacked me verbally by saying she is documenting every time she sees me suctioning her. She went on to say that everyone is talking negatively about me out there, she isn't the only one who had a problem with me.  She argued, she raised her voice, she tried to bully me argued and threaten me, and when I spoke to the charge nurse there was absolutely no apology given. It is appalling that she is being allowed to speak to me that way. Also, she was in the room only to give meds after that. She spent at most 30 minutes cumulative in the room on a 12 hour shift.

- right at shift change it was decided to move kenzie to a different room. Because everyone wanted to be somewhere else, Kenzie's coughing spells were ignored and her sats hung around 89 -91 for the next dew hours even though she had been above 96.

- due to the set up of this new room, the parent area is to the right of mackenzie. Mackenzie is not able to turn her head to the right and I cannot see her face. Given that she is non verbal and unable to express herself, seeing her face is essential. It also means her vent circuit has been laying across her body. I spoke to the charge nurse of these concerns and was told that we could not be accommodated. I've been told today by Karla that we can be moved, it's been almost 24 hours in this room and we are still here

Imagine being all alone for 52 days having had all this happen and being completely ignored and bullied and retaliated against.  That's what it was like.  All of this bullshit on top of being scared out of my mind that my daughter might die.

Days to follow

It would be hard to remember everything exactly over a period of 52 days.  I remember events clearly, I just don't always recall their order.
Once Kenzie was back on the bipap after her blood gas showed that she was in respiratory acidosis, I was still not in fear for her life.  We had done this before where she just needs some support for her lungs while waiting on the virus to run its course.  But I guess after having done it before a number of times, it made this time harder for her.  They had tried a few things to help improve her oxygenation such as a mag drip and some continuous bronchial dialators but she wasn't improving.  They told me that they would give her a couple more hours to respond but that they would likely need to intubate her.  This is something that we've been through before too, so again, I wasn't in fear for her life.  I mean, I knew it was possible because of the severity, but I didn't feel it could happen. Because I wasn't fearing her death, I didn't feel like Adam should make the drive all the way from South Carolina.  I knew he would want to be with her, but I also thought that he should keep working and trust that I would let him know if he needed to come home.  He was able to video chat with her before she was intubated, but she was not responding to anything like normal.
I think it was the following day when I started to suspect that this time was different.  I called Adam back and told him that I though he should come up.  I had already called her Dad.  Even though Jason (Dad) isn't a part of our lives on a day to day basis, he is usually willing to come to the hospital.  He mostly comes only when I need to leave, but this time he came just to see her.
They called the anesthesiologist up to do the tube insertion.  They feared that her severe scoliosis would make it difficult to place the tube.  The anesthesiologist are the ones who you call for scary placements.  They were able to place her ET (endotracheal tube) without difficulty, thank goodness.  They let me stay with her for this procedure, that was helpful for me.  I know too that they are more willing to let me stay if I can demonstrate to them that I won't be an issue they need to deal with by either passing out, crying hysterically or asking a lot of questions.  Parents of special needs kids tend to learn that lesson early.
Now that the tube had been placed they were able to get better volumes in her lungs but her body wasn't able to oxygenate very well.  She was on high bipap settings and about 60% oxygen just trying to keep her body oxygenated in the 90s.  Adam made it up, he and his girlfriend drove straight through the night after work, it's an 11 hour drive for them.  He made it just in time.  Kenzie was having more and more trouble and her body was failing.  It's never a good thing to see the attending physician just hanging around the doorway.  This attending physician is someone we knew from previous hospital stays while he was still in his residency.  He told me that he was "running out of his bag of tricks".  When I heard that statement that was the first time I have ever thought that she would likely die.  I am just so glad that Adam was there.  Even though I am his mother and he was worried for his sister, I took comfort with having him there.
They had an idea to turn her over onto her stomach.  I didn't know this was a thing they tried sometimes and Mackenzie would never normally tolerate being on her stomach, but they had at least 8 people bedside to move her.  The goal is to give the lungs as much space as possible, they are bigger in the back so to speak.  She immediately dropped her pressure and her oxygenation to a dangerously low level.  Adam was in the room at the time but I ushered him out.  I now know firsthand how hard it is to watch someone you love die.  I still have nightmares after seeing Mike receive CPR for a half hour with all the blood coming out of everywhere.... ears, nose, mouth, trach stoma, g-tube stoma.... it's a horrific sight and I wanted to spare Adam the possibility of having to see it with his sister. Jason was there so I had him stay with Adam outside the room so that I could go back in for Mackenzie.  They needed to quickly position her back to laying on her back and I needed to try to make sure they didn't break any bones while doing so.  Her bones are brittle.... it was now a lower priority but I still felt like it was necessary.
After she recovered from the position change, the attending took me aside and told me that it was looking less likely that she would live.  He started talking to me about a procedure they do there called ECMO.  I had never heard of it before but he said it is what they do when there is nothing left to do.  He said that she currently meets the criteria but it would be up to me to approve the procedure.  That I could instead chose to just let her die.
This is where it gets strange for me. I determined later that his questions were trying to get me to decide if her life was worth saving but since that question would never cross my mind, I didn't understand his questions.  He asked me "what is Mackenzie like?".   I thought it very strange given the circumstances that he wanted to get to know her.  My best guess was that he was preparing me for the possibility that she would have severe brain damage with all this and may not be the same girl.  I was caught so offguard by his question that my answer now seems to be just as odd..... I said "she will definitely let you know if you picked the wrong movie for her to watch".  That was my answer.... that my child will tell you when she is pissed off.  I know I was trying to give him proof that she had a quality of life and a desire to interact and be happy...... but I explained her entire existence to this man by saying how she gets pissed off.
With the ECMO procedure, they explained to me that they would be bypassing her heart and lungs and doing all the work for her until she could do it herself.  That the success rate was maybe 70% for kids who had come in typically developed.  For Mackenzie, her odds were closer to 40%.  That's if she could survive the placement of the tubes.  They speculated that the tube placement itself might kill her due to her scoliosis.
I am very fortunate to have some highly intelligent medically trained friends.  I messaged them and decided that I would not consider the ECMO procedure until the ventilator settings had been maxed out.  There is some research saying that waiting could decrease the odds of survival, but 40% was lousy enough that I thought it best to avoid it at all costs.
Mackenzie was moved down to the second floor ICU from where we were ..... 8th... since that is the floor that ECMO is done on.
As a  testament to the prayers of all the friends on facebook and extending to their friends and a testament to the incredible strength and will to live Mackenzie has... she did not need to have the ECMO procdure done.  She was on their radar for 3 very long days, but was finally cleared.  Once she was cleared was when I realized that she was even on a watch.  One of the nurses who had been assigned to her came back in just to check on her and she told me that she wasn't really her assigned nurse that day, she was an ECMO nurse and was watching her.
While we were there I know of at least 3 other children who had to have ECMO done.  I don't think they lived.
Thank God Mackenzie avoided that same fate.

Lucky to be alive

I haven't written on this blog in quite some time.  Last week I was fortunate enough to bring my daughter Mackenzie home from the hospital after spending 52 days in critical care.

She went in to the hospital with a fever of 106 and with having a seizure.  I had been out to dinner with a friend and was still 30 minutes from home when the nurse called me.  I tried to make it home before the squad arrived so that I could be sure to ride in with her, but I was maybe 2 miles from the house when they arrived.  I turned around and went straight to the hospital.
This isn't the first time I have had to go alone to the hospital to meet one of my kids coming in by squad and it never gets any easier.  My mind races a thousand different directions and all of them ending in the nightmare of her dying before I can get to her.  You'd think dying would be horrible enough, but for some reason knowing she would be passing on surrounded by strangers is worse still. Luckily she and I made it there roughly the same time and I was able to quickly assess her and see for myself that the seizure had stopped.  Her previous seizures, which had been over 12 years ago, have been irretractable (status) and they have had to intubate and induce a coma in the hopes of stopping them.  So seeing that the seizure had stopped on its own was a relief.  Seeing her respond to me was another relief.  Prolonged seizures can sometimes cause brain damage and I didn't know how long she had been in one.  We spent quite a few hours in the emergency room and she even seemed to stabilize some on her own with a few breathing treatments and some more Motrin.  Her chest xray was even clear.  But her fever was not coming down fast enough and because of the meds to stop her seizure were given, her breathing was slowing down.  She needed to be admitted.

A few hours later and we are being admitted into the critical care unit.  The nurse practitioner and the attending physician were just outside the room speaking with me as Mackenzie was being assessed by the nurses and respiratory therapist.  The NP told me what all she planned on doing for her and then the attending spoke up and said that she needed to be tested for the flu.  The NP had not included that test in her plans because they had yet to have anyone test positive this season.  The attending wisely said "there is always the first".  Mackenzie was tested and found to be positive for influenza A.  I was glad to have something identified so quickly and was hopeful that this meant she would have a short stay.
She was put on a bipap mask since her breathing was so diminished from the antiseizure medication.  She did well while on the mask and the next day the new NP gave the order to take her off of bipap and put her on just a nasal cannula.  She seemed to be fine at first but then she started struggling.  I asked to speak to the doctor and the same NP came in the room.  The Advanced Nurse Practitioners are seen as being the equivalent to a Fellow there, something I don't agree with at all.  This NP did not examine her or listen to her lungs or anything but still ignored my request to put her back on her bipap.  I got the normal "she only needed it because of the Versed, Mom.  She's doing fine".  I didn't agree so I asked to speak to the Attending.  It was close to 3 hours later before the same NP came back in and said that it was decided to keep her on the nasal cannula.  I hated that our stay was going to start this way.  I hate arguing with the so early in the "game" because I know that just means that we will be treated like shit the duration of our stay.  But sometimes you just have to.  I had to.  Eventually he responded to every request I made with "we just aren't going to do that, Mom".  Finally I got him to agree to getting a blood gas since we couldn't agree and he refused to let me speak to anyone else.  A blood gas was obtained and even though I don't remember all of the numbers, I remember one.... her pH..... her pH was reading 7.22.  Mackenzie was in respiratory acidosis due to the ego of this NP who would not listen to me and my assessment.  She went back on bipap.
I was doing my very best to channel Mike and what he would have me say when I needed to speak for him to get his needs met at the hospital.  My was of communicating before Mike was very curt and exact, after Mike, I am more "do you think we could consider?".....  It is exhausting to me, but he is right..... it usually works.
At this time, Kenzie was stable enough that I could reflect back on the last time she was there.  The last time she was there was just a couple months after Mike had passed away and I was not in the best mental state.  I didn't seem to be this time either.
In order to keep this blog shorter, I'll stop with this.  It also never gets any easier to see people approach your child who is sick and scared, and not even address her at all.  Not one little acknowledgment that she is a person with any thoughts or feelings.  They just start doing things to her without one f-ing word.  I try to gently coach them by talking to Kenzie on their behalf telling her what they are doing and that she's ok.  But what I really want to do is hurt them..... every single one of them who show no respect for my daughter's life, I want them to have to experience everything they are doing to her without any ability to communicate or stop anyone.   Don't worry..... I never have.  I never will. But telling them isn't enough.  In order for them to change how they treat my daughter, they will need to experience something personally traumatic.  And that is a damn shame. 

The Steve Gleason documentary

I watched the Steve Gleason documentary yesterday.  I purchased it awhile ago but didn't think the holidays would be a good time for me to watch it.  I loved it.
You know how when you are first married and suddenly all the movies of married couples are just funnier.  Or when you have your first child and now all the programs of babies seem funnier.  It's all just where you are in your life that bring more to the art you are experiencing.  Who would have ever thought that a documentary of ALS would make me laugh?  It also made me cry but that, I expected.  This film is just so very real.  There was one part where his wife was in a separate bed from him and he is typing out his disappointment in something she didn't do and it was like I was hearing Mike all over again.  To hear her say "ok" without even looking up just spoke volumes to me. 
There aren't direct parallels in their relationship and mine with Mike but when it comes to how the ALS affected them, that's when I felt connected. 
Living with ALS even as a caregiver is lonely.  Very few people really grasp what your lives are like and now I am watching this and thinking...... Wow, it wasn't just us.  Of course, with Steve being an NFL football player I assume they had resources that Mike did not since his football was college.  Their outings showed a lot of people helping.  I would have given anything to just have someone sit next to Mike so I could take a shower some days.
I highly recommend watching this movie, but to tell the truth, it may not mean as much to you as it did to me.  Just like all the other examples I gave of why things speak to you, this one might not.  But if you are interested in a window view of the life of someone living with ALS, this movie gives you the seat of the house.

New Year..... now what?

One thing that was in my face apparent when it came to finding qualified nurses for Mike is that.... there aren't any in homecare.  This isn't anything that I have experienced with my girls in a while because of the 4 nurses I had here for them, the longest employed had been 14 years, the most recent was 5 years... and that was my brother.  When I got out of nursing school, I had no intention of being Mike's nurse but I went to school to be a paid provider for my girls (allowed in Ohio after 18 years old and if working through an agency).  So when one of the 4 nurses became increasingly disinterested in doing more than the bare minimum and consistently showing up late, I was hesitant to fire hire knowing that finding nurses is difficult.  Made even more difficult because my girls can't tell someone what they need.  Before making the difficult decision to end her employment, I talked with the other nurses to see if they have any intention of changing their schedules.  Mostly the one who had been here the longest.... 14 years..... even though she was only working 18 hours a week.  The one I was firing was working 20 hours per week.  No one indicated any desire to change or reduce hours so the next time the nurse was late without explanation (and this time with eye rolling) I fired her.  This meant I was now going to be working 36 hours a week here.  When I say working... I am working, it's a job taking care of my girls.  They are dependent for all care and nursing skill is required to keep them healthy.  Also, when I say I'm working 36 hours a week, I'm not including the nights.  Every single night from midnight to 8am I am up multiple times a night to keep them healthy and meet their needs, those times I am not paid for. 
I was working out pretty good, I was enjoying providing more direct care for my girls and didn't mind staying home more.  I still had M,W, F evening to go out with friends.  And then... the nurse who had been here for 14 years who the month before told me she didn't foresee any changes in her schedule QUIT.  She gave me notice and it was amicable, but add her 18 hours a week to my 36 hours a week (add another 48 for nightshift) and I am now working much more than I ever intended. 
I'm tired.  I'm still glad to be providing direct care for my girls, but it takes a lot out of me.  My only free evenings now are Monday and Friday.  Unless I hire someone else, which scares the shit out of me. 
The one I had fired sent me a text asking if she could come back for 12 hours a week.  I considered it, afterall, she was trained and she knows what to do even if she sometimes chose not to.  I told her I didn't have any openings. 

For the past couple of days Taylor has been running a fever.  Not too awful high, and responds quickly to the Motrin and she isn't showing me any other symptoms so I'm assuming it's viral.  My nursing mind is very rational and usually spot on.  The Mom side of me trusts that I know my girls and I'll act appropriately.  But there is another side of me now... the side of me who watched Mike die.  That part of me freaks out with every sign of illness.  Every time their temperature increases and they have that look on their faces telling me that they don't feel good, I relive Mike's death.  It's painful.  This time, it has been made worse because of the rest of the world celebrating.  New Year is a big deal to people.  I'm jealous of their carefree partying and their hugging and resolving to do things different starting "tomorrow".  I'm jealous, but then I'm grateful.  I'm grateful that we aren't in the ICU.  I'm grateful that all of our needs are met. 

Today, I'm tempted to rehire the nurse.  I feel like I am still healing sometime from watching Mike die and it is going to take some more time to gain some coping skills.  And then the next second, I don't want to give up their care to anyone else.  I want them to have the hands on care from the one person on the planet who loves them the most....me.

So..... Happy New Year!  Let's all hope for the best.

My first Harvard football game.... well, a lot of firsts

A few months back when I was put in contact with Bob from the Harvard Varsity Club he said "hey, if you ever want to go to a Harvard game let me know".  I wanted to go to the Harvard vs Yale game since that is the game I heard about from Mike's friends on how Mike sacked the quarterback for the win back in .... probably 1990.  I almost picked a different game to go to since I was afraid of traveling with the possibility of snow but a friend, Bill, called me a chicken, so I booked my flight.  I was able to get the nursing all arranged and my flight and hotel booked and luckily there wasn't any snow anywhere!
My girls were healthy but in true Taylor fashion she was close to having a seizure the day before I was to leave.  Fortunately, she didn't have one and I was able to get a little bit of sleep.
I had a friend available to drop me off at the airport.  Even though I don't travel by plane often, I am somewhat familiar with what is now called the John Glenn airport here in Columbus, Ohio.
On the first flight over to Boston I was sitting next to a young man who was probably in high school, we exchanged greetings and he pointed to his mother across the isle.  I offered to switch seats but she didn't take me up on that (maybe she didn't like the aisle).  Once we were up in the air, I was all settled to read my kindle when I looked over at him retrieving his paperback book from his pack.  I smiled at seeing someone his age with an actual book.  I smiled even bigger when I saw what book he was reading..... you might remember me mentioning this book before..... he was reading one of Mike's favorite books!  The same book he bought for me for my birthday, the same book that he told me was on a short list for books he has read multiple times, the same book I was reading to him the last week before he died (I was trying to keep something familiar around him since I figured there was significant brain damage having been 30 minutes without much oxygen)... the book was Watership Down.  I told the kid that that book was my boyfriends favorite book and that I had just read it myself about a year ago.  He smiled broadly and said that his dad gave it to him to read.  He then told me where he was in the book and what his favorite part so far was...... he gave this all voluntarily, I hadn't asked him.  It was a lovely way to start my adventure.
Once at the hotel in Boston I foolishly ignored the advice of the information desk and decided to walk to the Hilton.  It was foolish because it was about 1.5 miles in a very confusing trek through multiple terminals.  I was confused and hungry and in need of a restroom by the time I finally made it to the hotel.  Luckily I had checked in through the app and had the digital key all ready to go.
I wasn't there long before I needed to find my way to the Harvard campus and try to meet up with Bob or at least the will call before the hockey game started.  The valet at the hotel recommended the subway (which they call the "T"), he circled the stops that I would need to make it to Harvard Square.  The hotel shuttled me over to where I would pick up the subway and from there I just started reading signs.  I had NEVER taken a subway or bus anywhere since middle school school bus.  I bought my Charlie Card, I found the first train.... I found the second train.... I found the third train (on my second try) (I didn't know that you needed to know the final destination of that train in order to get on the right one).  I got off the last train at the Harvard stop and looked around for an exit.  I found it by just walking forward.... nothing more than luck.  Now I'm standing in Harvard Square but I still don't know where the hockey stadium was.  Google maps didn't help.... it kept saying "head east towards JFK street".... which was not at all helpful since it was dark so I didn't know east from west and I didn't know where JFK was.  I found someone willing to help me even though they didn't know either.  They at least knew that the athletic complex was "over the river" so they walked with me to the bridge.  Ok..... now I'm closer.  I see an archway that says Gate 1 and figured I'd start there.  There really isn't too many people around so finding someone to ask wasn't going to work so I just kept walking since I couldn't think of a better idea.  Remember it gets dark early so I am walking in a parking lot towards building with no lights and no people.  I found a building that said Dillon Field House and that sounded familiar so I went up the steps and there...... there was Bob.  I pulled up his facebook page to make sure it looked enough like him to approach with a "Bob?".  What are my chances of finding the one man that I needed to find without any address, any communication, any directions and having traveled a good distance.  Crazy.
He had my tickets to the hockey game and to the football game for me at will call so I walked that direction.  I was about an hour early for the hockey game and that area for some reason just sucked the life out of my phone battery.  If I lost my phone, I lost everything.  I found an outlet next to the door to the ladies restroom.  I spent the next hour tethered to the wall outlet and opening the bathroom door to ladies.
The hockey game was a good game.  The pace of the college level game was easier for me than the pro teams, that was helpful.  So now comes the challenge of getting back to the hotel. I asked the people working there how to get an uber and they didn't know.  I asked a security guard how to get an uber and he didn't know.  I am losing battery on my phone now and I've wandered around for about an hour in the dark, cold, hungry, low battery, clueless.... having talked to the uber driver only to have him cancel my ride because he said he couldn't get to the hockey stadium... and I was telling him that I couldn't find a road and that I didn't know where I was.  I was running out of options.  I called a friend to hear a familiar voice because the isolation was kicking in.  He cares, so his end of the conversation were all solution statements, all of which I had already tried, so I just hung up because I was just getting more frustrated.  Finally I found a young guy and asked "hey, where do you pick up an uber?".... and as simple as can be he says "up here, it's where I'm going".  Ahhhhhhh.... finally I had a little help.  When I got to where he was continuing and I was staying he said that it should only take them about 15 minutes and that he could stay with me if I wanted.  I thanked him for his help, sent him on his way and waited on the uber.
This was my first time using the uber app and even thought I managed the app and the request, there was still the issue of recognizing the car..... I only really know car, van, truck... and then colors.  LOL  They gave the plate number but they don't know what you look like so it isn't like they pull right up to you close enough to read the plate number so reading the plates in the dark and drizzling rain was a challenge.
On to the next day... the day of the tailgating and the game, I took an uber to the game but there was so much traffic that the uber driver suggested I go ahead and get out so I'm not paying to sit in traffic (that was kind of him).  I am now walking the same path I did the night before but this time during the day and I was part of a hourd of people going the same place.  I found the tailgating but there were probably 6 different sections and multiple tents in each one and even though I knew of 2 people who were going to be there, I didn't know where "there" was.  I figured the older the alumni, the closer to the stadium, so I started walking toward the stadium.  And just guess who I saw right away.... Bob... the guy that I needed to see the night before.  He offered to take me around and introduce me to people but being in his position he was easily distracted and had wandered off without me.  It was then when I saw another familiar face, Bill, with his kids.  I walked with them for awhile and found the 90s tent.  I stayed there and just wandered around with a jack and coke while he and his family went exploring.  It wasn't too much longer when another familiar face showed up, John, with his family.  I followed them into the stadium so I would have a better idea of where my seat was.


This is where I might be sound like I am stepping on some toes here and I don't mean to be, but again, this is my blog where I can write what I experience through my eyes.

Before going on this trip I had a few people lined up to go with me or meet me there and I had people available to join me for dinner or drinks here and there and for whatever reasons.... none of that happened.  I am used to being alone and I usually prefer being alone, but this time..... this time it left me feeling very vulnerable and in a heightened state of confusion the entire time.

Bob had told me the day before the game that they were surprising someone with another grant from Mike's Fund and they would let them know the next day (being game day).  I had wanted to meet the family in person after having exchanged emails with the wife of the recipient but it never happened.
The first time I saw them was when they were taken out to the field by Bob and a camera to be awarded the grant.
Try to put yourself in my mind for just a second, after all.... you've made it this far...... I am sitting in the stands of where I would have been to watch the love of my life play football during his healthy days and without any warning I look up and see on the big board his name.

I see the family going out to the field, I hear a voice talking about my Mike..... the man I loved and cared for for over 4 years without much help at all..... his name was right there and another man with the same diagnosis was on the field (with his wife and children) receiving money raised and awarded with Mike's name as the Fund.  I felt instantly like I did when I read on Facebook of when Mike's funeral was to be held.  I felt stripped of any association to the man I loved and cared for when no one else would.  I dedicated my life to caring for him along with my kids because of the love that I had for him and the life that he deserved wasn't the one he was forced to live.
Can any of you imagine what that feels like?  Your wife, husband.... whatever.... and you are in the stands caught unaware.....
Not only had I spent the last couple of days alone and lonely and lost.... it now culminated to sitting in the stands as a bystander to the memory of Mike's life.  And ended with me taking the subway back to the hotel in tears with all kinds of emotions racing through my head.  It's a wonder I made it back.
I know none of this changes who I know I was to Mike and who he was to me, but it felt very disrespectful.  Would it have been different if we had been married.... probably?  Can anyone marry someone when they need services from the State.... not easily... you are no longer eligible for the services you need.  Would Mike's mother have been treated that way if she were still alive... nope.

I was so glad to be home.  So grateful for my friend to not just pick me up at the airport but come in to the terminal and greet me with a hug, and get my bags for me, and open my door for me, and get me coffee, and carry my stuff back into the house.... I was just sooooooo grateful for not having to think anymore.  Not having to be alone even for just a short ride home.  And to find my girls healthy and happy and with huge smiles on their faces to greet me. 

October 7 .... move in day

After waiting an entire year (or maybe more) from the time we applied for home services to the day he moved in...... the day was October 7th.  I remember when the case worker came in to the nursing home and said that everything was in place and all we had to do was pick a day.  We didn't answer her right away because we both knew that being anxious to have him move in and the reality of getting all the vendors in place, were things to consider.  I had already been in contact with the vendors that I use for my girls so that the nursing home just needed to order the supplies (they require physician orders initially).  The only thing we were really working on was the ventilator itself.  The company I use for Taylor wasn't accepting new patients for ventilators so we needed to find a different one.  The social worker at the nursing home had a contact and I let her get it all set up.  Just .... maybe 2 days.... before he was to move in I asked for the respiratory therapist to come in and go over the transition.  Because the State was paying Mike's medical expenses they weren't too keen on paying for 2 ventilators but he couldn't go home with the one from the nursing home and he also couldn't go home without one.  It's still rare enough for people to be living in the home setting with a ventilator that the State regulations haven't caught up with changing their rules to allow for things like this.  The vendor came in and when I asked what ventilator he had available he gave me the make and model of a ventilator that I didn't recognize.  I pulled it up on my phone and when I saw what he planned on giving him I knew that they were just pulling out an archaic model from the back of storage to make the most money.  I refused the ventilator even at the risk of delaying his move in day.  These things are important.  Part of what I wanted to accomplish was to get the same make and model that I was already familiar with, being Taylor's ventilator.  With all the stress of transitioning his care over to entirely me, I didn't want to relearn another vent.  And I didn't feel comfortable using the company that the nursing home found because of what they offered and also their answers to other crucial questions like response time to troubleshoot events.  I called around and found a company that was able to meet all our needs and had one in stock (another problem commonly found).  This new company was great, the respiratory therapist was someone who really cared about Mike's needs and respected my comfort level with the vent I knew the best. 
We didn't lose any days with changing this all around, thank goodness, it was just a little added stress.  Move in day was such a whirlwind.  Mike was so over the moon happy, as was I, and it all happened without a hitch.  I had already packed up all his belongings (my brother helped me with that) and painted his room to the new colors he chose, and set up all the supplies we would need immediately so all that was left was Mike.  Mike had already gone over with me what his needs were likely to be while being placed on the gurney and while traveling since he wouldn't have a way to communicate besides me reading his lips.  Not just the anxiety that he had with being moved around like that but also the pain.  Mike was a big guy and didn't always fit on the length of a gurney.  Because most paralyzed people are without feeling, most medical support people are not mindful of not hurting him.  I had to be diligent about where his arm, hands, legs, feet and head were at all times and to sometimes interrupt what was going on to fix what I knew would hurt him.  Every bump they hit, every corner they turned required a quick visual assessment and adjustment.  Also, his butt was not in good shape.  What I mean is the skin was not intact due to the care given to him at the nursing home.  He had 2 pressure sores when he came home and some other volatile areas that needed tended to for healing.  Having the broken skin on his butt made the transportation events even more painful.  We had already talked to the nursing home physician about loading him up with as much anxiety and pain meds that he could safely have (that amount is higher with the risk of respiratory suppression not being an issue with the ventilator) but it meant that I would need to be more aware of him since he wouldn't be as aware of himself. 
As soon as we got him moved over into his new bed in our house, I took a picture of him.  I wanted to capture that moment.  I am so glad that I did even though he didn't like pictures of himself (at first).  I don't need the pictures to bring up his face yet, but one day I might.  He was so excited he couldn't sleep.  Even with all those drugs in his system he was so alert and so happy.  I brought the girls into his room to see him.  They had already met when I brought the girls to the nursing home to visit with him.  We all hung out together in his room while I made last minute adjustments to rearranging supplies and to meeting his needs. 
We had a nurse scheduled for later that day so there wasn't much rest for me anytime soon.  There was so much more than just medical needs with Mike that my input was required a lot of the time.  So even with a nurse, I was never really off duty.  The nurses I have for my girls have been with us for 8-14 years, I'm still on call but rarely needed when they are scheduled.  That wasn't the case with Mike.  If I was in the house I could hear everything in his room.  I tried to keep my distance with new nurses for just a bit so that they could develop a relationship of communication and trust, but inevitably I would hear Mike's computer saying "get Ann".  That was 24/7.  It was hard to not lose my patience with the nurses, as Mike already had before telling them to get me.  I walked in on the most ridiculous of situations.  Knowing him as well as I did, he rarely had to tell me what was going on, I could assess it quickly.  Most of the time I did what was needed to be done and spoke to the nurse as I was doing it so that they could learn a new skill.  It wasn't received that way.  They usually just sat back down and got back on their phone while I tended to his needs. 
But watching his face while he was sleeping and seeing the difference in him from how I knew him in the nursing home made it all worth it.  He knew he was finally safe and loved and cared for.  I knew that he was finally able to live without fear.  ALS is a bitch, living in a constant state of fear due to your environment makes it a thousand times harder...... that was all gone. 
So this month is another memory for me to experience without him.  But just like moving in with me was a step up for him in care, I try to think of him in death as an improvement from the pain he was in while here.  That helps.

Lessons still creep in

When caring for Mike became my sole responsibility there was a lot to learn still.  We had spent over 2 years together while he still lived in the nursing home where he received care from them with their protocols.  Once he lived here we were able to establish new protocols that were specific to his care.  Turns out, some of those things specific to him are now helping me with Taylor.
I have an intuitive nature that helped me figure out how to help him in emergencies that we both were always grateful for.  He could always tell what was going on with his body, which is unlike most paralyzed people due to ALS unique nature of letting you know exactly the hell you are now living in.  Mike was such a huge supporter for me but more so when he moved in with me.  As one family unit, he wanted to contribute to not just me, but my girls.  When I would tell him what was worrying me about them (mostly Taylor) he would first and foremost ask if I had time to pray with him, if not, he did it without me.  He would message me when he was done.  My prayers were always quick little thoughts both good and bad and would be throughout the day.  Mike's prayers were these long meditative sessions.  I often didn't have time to pray with him but sometimes I would say... yes, but I'll need to duck out of this if I can tell I'm needed.  He would message me when he was done and I would pop in and say "Amen".... he would enjoy that ending.... me too.
Some of the things that I started doing with him to help keep his airway clear worked great, some not so great.  I could usually tell on my own what the outcome was, whether it had the desired outcome.  But Mike could tell me how it FELT.  That was a huge help for me when caring for Taylor.  When Mike realized how much his input could help me help Taylor he started thinking more about what things could be similar between the two of them and how maybe he could help be a voice for her. 
Both of my girls have been sick this month.  Not quite hospital sick, but that is a small difference sometimes.  One night I had been working with Taylor for about 3 hours (2am to 5am) trying to keep her airway clear and oxygen levels in the 90s.  At 5am when I took a step back and tried to get myself out of reaction mode and into thinking mode, one word popped into my head....... cuff.  I often get these little one word insights at just the right moment, so often that I no longer question them, I just do them.  I knew what was now needed, I deflated her cuff and the change in pressure made her cough really big.  Once she made her secretions mobile, I could get a LOT more out of her.  Her oxygen numbers popped up to 98%!! That was a huge relief and a huge difference. 
Once I sat down and started thinking about the past 3 hours it dawned on me why "cuff" came in my head.  That was a trick Mike and I came up with together.  When we used that method in a hospital setting, I would often get myself yelled at, but it worked.  Mike knew that when we decided to do those things the consequences initially were on me but if we didn't say our sorries and show remorse, things got worse.  That is always an issue with patients with chronic conditions.  Mike knew what he needed but they would never do it, they wouldn't even put air in his cuff when you could hear it leaking...... crazy rules sometimes take away from actual patient care.
Once I knew that my intervention was actually Mike's intervention for her, I could breath better.  He's still helping me.
Remember the songs that will randomly play that I associate with Mike...... well sitting in Chipotle the next day one of those songs played.  Picture it..... Chipotle.... what kind of music do you hear while sitting in a Chipotle.... now imagine this song coming on...... Dance Me to the End of Love......
Such a good feeling.